Robin (and Will) Daisley, Charleston, SC – Parents of Kelsie Daisley, 25, C-ACC, hypotonia, seizure disorder, tic disorder

I offer this as information to help others who are facing challenges – either as the person with a DCC or a parent who is struggling to help their child succeed.

Our daughter Kelsie is 25 and was diagnosed at birth with C-ACC and hypotonia. At age 6, she was diagnosed with a seizure disorder and at age 12, a tic disorder was diagnosed. Both are treated with medication. None of this has stopped Kelsie from enjoying life. She sings in our church praise band, attends an adult Sunday School class, works part time, attends college classes, keeps up with friends from all over through social media, gaming platforms and phone calls. And she just got her driver’s license a few months ago.

Kelsie started with an IEP at 7 months when she began PT to strengthen her core muscles and OT was added at 12 months to work on dexterity and strength. PT and OT ended by age 5. ST was added for a couple of years in elementary school (perhaps in first and second grade) for help with sequencing, such as telling stories with the events in proper order.

She began public school at age 3 in a Varying Exceptionalities pre-K classroom and attended public school through 4th grade (repeated 2nd grade the year we moved from FL to SC). Kelsie was provided with resource help, both in class and as a pull-out. On advice from her neurologist during her 4th garde year, we then switched to a local private school that follows the Orton-Gillingham practices. The neurologist was on the board of directors of the school, so he was well-versed in the what the school offered. She attended there from 5th through 8th grade and did quite well. Unfortunately, during her 8th grade year, the school opted not to offer a high school program the following year, so we were prompted to transition to something different.

Under advice from a trusted guidance counselor friend, we enrolled Kelsie in an online high school that allows students to work at their own pace and hired tutors to help with the learning process. Two of her tutors were actually teachers at the Orton-Gillingham school she had attended, so they knew her fairly well. It took 4 years to complete 9th and 10th grades. By then, the Orton-Gillingham school had undergone a change of leadership and was again offering a high school program. The program amounted to a one-room schoolhouse model with about 8 students ranging from 9th to 12th grade. It turned out to be a good decision and Kelsie graduated in 2019.

From there, Kelsie went on to attend a program with the local South Carolina Vocational Rehabilitation center where she received job training, interview coaching, and other mentoring. In November of 2019, before she actually completed the Voc Rehab program, Kelsie secured a part time job at our local Panera Bread as a dining room attendant. She worked there for three months and resigned in February 2020 to take a job as a bagger/front end worker at our local Harris Teeter grocery store (for better pay) where she was an “essential worker” throughout the pandemic. They have accepted her differences and make allowances for her quirks given that she is a dependable employee who works hard. She loves working there and the people, and she will celebrate 3 years there this coming February.

In addition to her part time job, Kelsie begain taking courses in Early Childhood Education at Trident Technical College with a plan to earn a certificate in Special Education. She took one course online in Summer 2020 to see if she liked it and could handle the work. That led to taking two more courses in the Fall and then her advisor recommended she matriculate into an Associates degree program in Spring of 2021. This was so she could earn an Associates degree that they said would be required to work as an assistant teacher in either pre-school or public school. Becoming a full time student would also allow her to take advantage of a free tuition program the state had put in place.

We worked hard to balance Kelsie’s part time job with her full time classes. She has trouble prioritizing tasks vs. desires to do other things (some will recognize this as an “executive function disorder”). As her parents, we constantly help her keep track of what she needs to complete for school and prompt her to work on those things. With the support she has at home, Kelsie has done well in her classes. However, this semester, she had to take a math class that has proven to be a significant challenge. And this challenge is resulting in a decision to change direction somewhat.

Her psycho-education evaluation and prior neuro-psych testing revealed a math disorder. Math includes concrete concepts (1 + 1 = 2) and abstract concepts (a + 2b = 24). Higher math requires the ability to remember multiple steps to solve problems. The abstract concepts and multiple steps are where Kelsie’s challenge lies. She cannot recall processes like the steps to convert hectares to square miles. (Hint: hectares are metric, miles are imperial; you have to know the measurements of a hectare and how to convert those distances into feet/yards/miles.) And she is not permitted to use her notes or other resources to take the tests.

Her college advisor seems to think the math teacher provides teaching support in the Math Lab or that Kelsie should be attending math workshops that are offered. The math “teacher” simply directs Kelsie to watch the instructional videos and go back to the practice activities, there is no active teaching. The math workshops are inconveniently scheduled at the times she is in her other class or scheduled to work. So that has left us working with her at home for hours each week, repeating the processes to solve the problems hoping that the steps and conversion factors will stick in her memory so she can pass the test and move on to the next unit. So far, it hasn’t worked. (We remind ourselves that not everyone will become a prima ballerina or a quantum physicist no matter how hard they try and that sometimes what others think we need to know doesn’t make much sense when we consider what we really want to do.)

Since this math class is a prerequisite to the actual math course (or a substitute science course which requires higher level math) required to earn the Associates degree, we are considering a decision for Kelsie to withdraw from the math class, continue with the child development class she is taking, and shift back to a cetificate program once she completes this semester. At the end of the semester, Kelsie would need only 9 more credits (3 classes, none of which are math) to earn an Early Childhood Development certificate. While that might not be what a preschool would require to hire her as an assistant teacher, earning that certificate would be an accomplishment she could be proud of. And while she would like to work with children at some point, she is quite happy working at Harris Teeter. Additionally, all of the courses required for the certificate could be applied toward a degree program if she somehow managed to make sense of math at some point.

The silver lining in all of this is that the certificate program she originally planned to complete required taking American Sign Language 1 and 2 (ASL). These were two classes that Kelsie thoroughly enjoyed, completed entirely on her own (no prompting or help from us), and she aced both classes. We have since discovered that there are ASL certificate programs through other colleges with courses offered online/virtually. So those offer an opportunity if Kelsie decides she wants to look into providing interpretation services at a local hospital, school, or therapy center.

Looking back at our experience with this, I question whether allowing the advisor to convince us that the Associates degree program was the “right” way to go was a good choice. Yes, free tuition is a nice perk for becoming a full time student. However, the added stress of multiple classes on top of a part time job that Kelsie has been so happy in (and that we felt was beneficial for her to keep) was not worth it.

Rather than working so hard and not earning the Associates degree because she could not pass the math component, by switching back to a certificate program, Kelsie will have the satisfaction of completing a goal…and that’s great for self-esteem. Whatever Kelsie chooses to do, she will have the knowledge that she set a goal and met it, and maybe that satisfaction can propel her to her next achievement.